Monday, 31 March 2014

Ups and Downs......

The last few weeks, since I last updated you have been busy (to say the least) and as I implied in my title, have included both highs and lows!

Both children have turned another year older, Daniel has had his Year 3 Production at school and last night we had the UK SDR party in Daventry (more about that lower down).

We have also found time for two trips to the London Orthotics Consultancy in Kingston-upon-Thames, for Daniel to be casted for (in the first trip) and then fitted with (second trip) new splints. This is a full day's round trip each time, but the NHS are unable to provide splints of the quality we received in St Louis, and since splints are so vital to support Daniel's feet correctly when walking, and on the recommendation of other SDR families, we decided to visit this private specialist clinic. In order to help the hyper-extension in Daniel's knees, the orthotist felt it best to put Daniel back into longer (AFO) splints. They are quite a lot heavier and are talking a bit of getting used to in terms of Daniel's walking, but they certainly help his independent standing considerably, and we are hoping that once he gets used to them they will do the same for his walking. After months of hard work, Daniel had reached a point where he could stand for 10 seconds unaided in his short splints. In only his second attempt with the new splints on he stood for a mammoth 2 minutes and 15 seconds!!

Have a look at this.... (it's the shortened version as we thought you watching Daniel standing for that long might get a bit dull!)

We also ordered a lycra suit from LOC. These suits can help children like Daniel will 'perioperceptive feedback' (telling their brain where bits of their body are in space). It should help his sitting posture and his issue with sticking out his left hip when standing or walking. They have to be precisely fitted to the child so only fit for 6 - 9 months before they need a new one, but again we have heard good things from many people and decided it was worth a try, despite the hefty price tag.

Here's Daniel wearing his suit. He decided he looked like a super-hero, because he has to wear his pants on the outside of the suit! His super-hero name is ........ 'Splint -Man'!!

However, in the midst of Daniel gaining in confidence and only two days before his birthday, something that we have worried about happening for many months happened....... he fell. His walker caught on a lip of the outside path while he was walking and he fell forwards. Daniel's CP means that he lacks normal 'saving reactions' so does not put his hands down as he falls. Therefore his face was the first thing to hit the pavement. He split his chin and knocked out two teeth, one of which was an adult top incisor (which had come through less than a year ago). We went to our local A & E department, where we were seen immediately - this may have had something to do with the fact that Daniel was screaming and the blood was pouring! They gave him morphine for the pain and glued his chin, but decided that he needed to be seen by  the Maxillofacial team at the bigger Gloucestershire Royal Hospital so we transferred there. The tooth was temporarily and loosely splinted back in place there (with the help of another whack of morphine) in a rather 'bodge job' (the best they could do in an A & E department on a Sunday night) -  , but we then had a fairly traumatic couple of hours at the dentist the next day where the tooth was pushed all the way back into its socket, and fixed with a wire splint. to neighbouring teeth. Daniel had to have a course of antibiotics (bearing in mind that a tooth had been picked off the pavement, rinsed in milk, then reinserted in his mouth). The wire splint has to stay on for 4-5 weeks and he has to have a 'soft' (mainly pureed) diet for that time, because he must not bite on that tooth at all. That has been testing my culinary abilities!

This is what his poor face and teeth looked like a couple of days later....

Daniel ended up having most of a week off school, as he had some pain for days afterwards, but has been healing up well since. We won't know the long term future of the tooth yet, but it is extremely likely to involve some significant dental work.

The whole 'pureed' diet thing meant that the poor little chap couldn't have a birthday cake on his birthday - so he had eight candles in a mega ice-cream sundae instead!

The fall has caused Rich and myself to take a big knock to our confidence in terms of letting Daniel be independent, rather than standing over him all the time, and of course we were devastated that the accident happened in the first place. However, to our great surprise, Daniel himself does not seem to have lost any confidence in his walker and we are still frequently having to ask him to slow down.

On Saturday we had a lovely evening at the UK SDR party, held in Daventry. This was a brilliant opportunity to meet up with several of the families with whom we were in St Louis a year and a bit ago, as well as many other families with whom we have had contact. The bringing together of so many children who have had the same surgery would be special in any case, but what makes it wonderful is the presence of some of the team from St Louis, including Dr Park and his wife, Mad Mike the physio, with his wife, Deanna Walter (the SDR co-ordinator) and Jackie (who was Daniel's lead physio when we were there). Mike Poole, the personal trainer who we see in Scotland, was also there, as well as Jeremy Marris from The Tree of Hope Children's Charity (you may remember that all money donated on Daniel's Justgiving page is held by the Tree of Hope, who claim gift aid on our behalf and pay hospital and physiotherapy bills directly). It was truly magical to see so many of the people, who in different ways have contributed to getting these children on their feet, all dancing with them.

Here are a few memories of the evening...

Very excited! Face is starting to heal too.....

Personal Trainer Mike Poole wasn't shouting at Dan on this occasion!
The children were all gathered together for a big photo at the start (see below for the final version of that in a newspaper today).

Daniel had a nice chat with Dr Park, and the physios from St Louis, but he was most thrilled to spend some quality time with his SDR 'twin' Brooke, both at the table and on the dance floor!


In fact, Daniel was keen to dance the night away! One of the greatest pleasures he gets from being in his walker is being able to dance, and he always makes the most of it!

Lucy was very busy too, especially with Brooke's big sister Nadine!

Daniel really wanted to dance until Midnight, but both he and Lucy were getting tired and by 10.30 he was like this....

So...... a good time was had by all! This morning this version of the photo of all the children was published in The Mirror. Can you spot Daniel?